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Wednesday, May 25, 2011

Woohoo! Randomization and some other crap : FSGS Sucks

I contacted my clinical trial study coordinator, Barbara, this morning, and she let me know that my baseline labs are in and they're hoping to randomize me by the end of this week. WooooHOOO! So, depending on what arm of the study I'm on, I'll be able to begin the actual trial next week :)

She's also going to send me my latest lab results to me tomorrow. That is one of the biggest personal benefits of this trial for me, in that I'll be able to constantly monitor my condition to see if it's changing. I have very little control over all of this, but knowing my numbers gives me some sense of peace.

Barbara also told me that she shared the blog with the trial doctor at Cincinnati (Dr. Goebel) and some other physicians, so that's GREAT! The more people that read this, the better. I want comments. I want feedback. I want a community!!!!

I'm so much more motivated THIS time around. The first time with kidney disease, when I just thought I had MCD, was awful. Not from the MCD, but because of the side effects of prednisone. I wasn't prepared at all, and it showed in my appearance, my work performance, and my home life. I feel pretty lucky that my husband didn't pack up and run because I was pretty unbearable. I had a LOT of anger....about EVERYTHING, and I handled it quite poorly.

THIS time around, I did a lot of prep work before I took that first awful prednisone pill. And even though my diagnosis has changed to FSGS, and none of the meds have worked, I STILL feel like I'm in a better place, and I think that's because I've been building my community. I've had changes to talk to other people like me, and the first time around I didn't even think any existed. I have a community of women on Facebook that I LOVE...love the interaction, love the commiseration...just love. There's also the people on inspire.com who have been a big resource for me. I've got a gazillion places I go (ok, maybe not a gazillion, but definitely a lot) to read, learn and share. Social media has been one of my biggest friends during this awful time.

I want to share my story with anyone who'll listen. I tell EVERYONE I have a kidney disease....for the sympathy (although sometimes it's nice on a day I feel crappy) but because people are so surprised, and then they start asking questions. But I also want to hear other people's stories, so please, if you read this and you want to share something, PLEASE DO! Comment, let me know you're story.

I certainly don't feel the need to be positive every day, as you've seen. I'm ok if I have a bad day, but I also know better than to wallow in it too long for fear that it'll swallow me. And with that said, time for a little wallow. I had ankles!!!! Well, I had them for a very short time...mostly Monday afternoon and evening. No idea why they came back, but it was AWESOME! But today, the swelling has been horrible! I knew when I hit the floor this morning getting out of bed that it was going to be bad, but this is the worst so far.

The swelling never looks as bad with shoes on

But then I take the shoes off and it's obvious.

We had severe weather warnings at work, which meant a trip to the basement. That wasn't an easy walk down 5 flights of stairs in these damn shoes. I was sooo happy to be home so I could take my shoes off and put my feet off. That dream was short-lived because we've had 2 or 3 tornado warnings so far tonight (waiting for the nth round right now) so I've spent a lot of time on my feet getting stuff together, trying to cram in a dinner, and all around pacing between the front and rear of the house looking out the windows. THAT has made my feet incredible large and sooo sore. Even the bottom of my feet are swollen, and all of this pressure is crushing the toe that I broke earlier. So now, I'm doing a whole lot of this:

3 comments:

Hi Jenn! I came to find your blog through NephCure's post on Facebook, and I agree 100% - FSGS does suck! I've personally been dealing with it since 1986 but it hasn't been until recently that I have found NephCure and others with a similar story. For some reason, it makes the journey just a tad easier. I am curious to know...what study are you participating in?

My swelling went down when I went to a low allergen diet (no gluten, no dairy,no egg). It was difficult with low salt too but may be it will work for you too. The closest diet similar to it is the GFCF diet for autism. It also helped with my proteinuria.